My last post was about following my gut and taking Rachel out of her residential school, which I did. Tonight I will briefly write about the last few weeks and the immediate future.
Rachel has been in her wheelchair twice since leaving school. Once to walk to have pizza around the corner and once to come to the park on our street. While at the park Rachel was able to swing in the “disabled people” swing for several minutes and could not have been happier.
Since she has been home I have put our house on the market! As a result of selling the house I moved her bedroom back to the second floor and she is sharing a room with her 10 year old sister, Julie. Rachel’s lower body strength and endurance for walking has dramatically increased. She is happier due to a lack of repeated transitions and having a verbal translator (me) near her at all times.
The school is trying to force the issue and send Rachel to a “Collaborative” school. I have requested, for the time being, pull out services. If Rachel’s Dad accepts her “Collaborative” placement then I will be forced to send her (unless she has diarrhea all of those days of the week), or I have to get a Dr note every 60 days requiring school to bring school to home. Since the house is on the market and the kids and I are moving, I think I am going to go for the homeschool option.
Rachel is happy at home. I am doing just fine with her. This is such a stupid “fight” and one which I am completely unwilling to lose because advocating for Rachel is at the top of my priority list. I know what she wants, I know what she lives and I know what she is trying to say when the words fail her. I guess I am up at bat. I haven’t swung a bat (literally) since high school. Luckily this is a metaphor and I will do my job as her Mom.
In 50 years this won’t matter to anyone. But the next few years mean everything. For Rachel, for me and for her siblings. Standing up for what you know is right for Rachel is the right thing to do.
I shall stand tall and proud and wearing a gas mask because Rachel sure does love to fart. <3Read More
I’m watching Rachel stuff herself a few feet from me with some pancake donut holes that you can buy at Trader Joes. It’s a Tuesday morning at 8:40 and my triplets (my other three children who are unaffected by this disease (I call them the triplets) are all at school. A little over a month ago I sent Rachel off to a new residential school and we lasted a month. They offer some amazing activities there for kids who have a wide range of disabilities and I highly recommend the place.
But the place just wasn’t for us.
She’s home for now while we figure out the next step. If the decision were hers she would return to the Middle School she was attending but we have to consider another option as well before she (hopefully) gets to return to her old school. She is sitting in her recliner under an electric blanket and listening to Sesame Street on Sprouts. Happy as a clam. I followed my gut and I’m happy about my decision to bring her home.
My favorite part about her being home? She is walking up and down the stairs and sleeping in her old bunk bed in her old room with her little sister, Julie.Read More
For the third year in a row, BJ’s Auto Repair in Norwell Massachusetts generously sponsors Team Rachel’s Race for a Cure! BJ’s Auto is our first sponsor of the year!
Website: http://www.bjsautonorwell.com/Read More
Petrocelli Public Insurance Adjusters are faithful sponsors of Team Rachel Race 4 A Cure and has sponsored all 3 races! This year Tami made sure that Petrocelli was our first road race sponsor. Thank you!!!
Website: http://www.petrocelliadjusters.com/Read More
Its 10:51 on Monday night and I haven’t been able to shake how much I miss Rachel since I shipped her off on the van yesterday afternoon at 4:00pm. I pushed for her to go to this school (she has never wanted to leave home) and now I can’t stop missing her.
I have some big decisions to make. I have an appointment tomorrow with the Pediatrician on staff at her new school to go over the MOLST form. Grab a box of tissues and imagine filling it out for your formerly healthy baby girl:
I want to pick her up and bring her home. The last day has been the hardest since she left. I left a voicemail for school at 7:20 tonight for her to call me but no luck. I will definitely be bumping into her tomorrow. She drives me crazy but I love the shit out of her. I usually get upset and just want my healthy daughter back but the last 48 hours has kind of been me realizing that I will take any version of her because sooner rather than later there will be NO version of her to have back.
This disease is relentless.